Monday, August 17, 2009

Healthcare Reform and Evan

I started this post a few weeks ago, thinking I might use part of it in a letters to our Congressman and Senators. I still may, but it needs some work. In the mean time I thought I'd share my thoughts...

I've been reading a lot of other people's stories about our current health care system--mostly about how "broken" the system is right now, and how it fails the people who are seriously ill. As much as I complain about insurance and the current system, I am very nervous about change.

As a "non-MD" provider, I am afraid that whatever change happens, my profession as a whole will get written out of the insurance loop and will have to start from square one fighting to get on insurance panels again, fighting to be paid the same amount as an MD for providing the exact same service. Even though the reimbursement rates from insurance companies are not the greatest, being on a provider panel does bring patients in the door. Very few patients are so loyal to a particular doctor they'll go regardless of insurance coverage. Loosing this would be a big blow to my ability to support our family.

But mostly, as a parent of a special-needs child, I am very afraid of what the future holds for my son, Evan. Evan was born with CHARGE Syndrome. He has a very tiny genetic error that has resulted in some very serious birth defects. In his short four years of life, he has spent about 6 months in the hospital (including his first 4 months) and has had at least 10 different surgeries. Evan receives all his nutrition via a feeding tube because he can't swallow liquids or solids without aspirating. He has severe sleep apnea and uses a CPAP machine at night. He is profoundly deaf and does not speak or sign, despite 3-4 years of speech an occupational therapy. He makes a lot of grunting noises and displays a lot of behaviors that are best described as "self-stimulating" or "autistic-like." Needless to say, Evan's health care needs have been (and continue to be) substantial. He has not yet reached our insurance plan's lifetime maximum, but I have concerns that could potentially happen.

I worry when I hear or read about people not wanting to pay for "someone else's" health care. I worry if (when) there is not enough funding to pay for the care all of us need as a whole, choices are going to be made as far as who receives what care and the people who are seen as weaker or requiring the most expensive care will be be denied it. I worry--in a society where something like 90% of mothers carrying babies with Down Syndrome chose to terminate the pregnancy--that my son will be seen as less worthy of care than someone who is developmentally "normal." Evan, and other people with developmental disabilities like his, cannot fight for his rights. What happens when his father and I are not there to stand up for him? As unfair as it is to expect someone battling cancer or some other terminal illness to navigate the bureaucratic maze of the health care system, it's even more ridiculous to expect it of those with developmental disabilities.

Earlier this week, I saw a message being posted on Facebook by people who believed(something to the effect of) no one should be denied health care because they couldn't afford it and that no one should have to go broke because they got sick. If you substitute "have a child with special health care needs" for the "got sick" part, that's happening already. The intervention and therapies necessary to maximize the potential of a child with developmental disabilities is huge. The cost to provide even an "adequate" level is substantial. If they had to pay for it alone, I don't believe any middle-class family could afford it. Adding on top of this the cost of medical care (almost always much higher than for a typical child)--it's a formula for financial hardship. I worry that it's only going to get worse. You shouldn't have to declare bankruptcy because you have a child with health or developmental issues...but it happens.

I don't know what the solution is. I wish my worrying would lead to an answer...for Evan, for everyone.

3 comments:

Sarah, after reading your letter and concerns, I'm sure you are expressing what many people are thinking and worrying over, and I hope that there will be some common sense and common ground found to continue to meet the needs of individuals and families that are being left out of the system called "Health Care", which really is minus the care portion. Grandma Key

Something really needs to change with our health care system- to at least have an option when you are no longer eligible for employer-funded or privately funded health care. Our little guy only has hearing loss and severe GERD, but his DuoCal isn't covered (he's failure to thrive), his hearing aids aren't covered, and we barely got his Nexium covered. Even with such "minor" medical costs, it really hurts us financially (we will have spent about $24,000 on hearing aids by the time he's 20, if prices stay the same). DuoCal is about $25/can, and the Nexium would have been $250/month without insurance coverage.

What is CHARGE???

CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.